Rachel Epperson didn’t see a doctor for four years because she had such a negative experience telling a local practitioner her sexual orientation.
Epperson, a 36-year-old lesbian, lives on the West Side with her wife of 11 years.
When she came out to a doctor she was seeing for the first time six years ago, the doctor excused herself to pull a nurse in the room. Later, the nurse laughed out loud when Epperson asked about the possibility of spreading HPV to her partner.
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“We get into offices and say, ‘I identify as a lesbian’ and it’s turned into almost this kink,” Epperson said. “I could immediately tell when I said I was a lesbian, the air in the room shifted. It was uncomfortable.”
Epperson, who now works as a clinical medical assistant at Equitas Health, a nonprofit, community-based health care system that serves the LGBTQ+ community, didn’t find another doctor until her wife started working at Equitas about two years ago. Her provider there is the first doctor that Epperson has actually felt heard by, she said.
Many others lesbians feel the same.
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A recent study by the Equitas Health Institute, the education and research arm of Equitas, found that although lesbians have similar health care needs to the rest of the population, they face unique barriers to accessing health care in an identity-affirming environment.
The Lesbian Health Needs Assessment found that although the overwhelming majority of survey participants felt comfortable disclosing their sexual identity to a medical provider, those who were not out to their primary care provider were less likely to seek medical care. The study also found that for lesbians of color, having access to providers of color was a key factor influencing their decision to seek health care.
The study, published in April, found that 12% of lesbians — who included women, nonbinary and genderqueer people — didn’t have a primary care provider. Their reasons for not having one included not being able to find a doctor, interest in alternative methods of health care, not considering primary care a priority and fear of facing stigma or discrimination.
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Those factors didn’t surprise Equitas Health Institute Director Julia Applegate, who led the study as part of her graduate program in public health at Ohio State.
The study looked at results of a survey of more than 230 lesbians in Ohio and an accompanying analysis of community conversations with lesbians of color.
As a lesbian herself, Applegate said it was important to focus on a population underrepresented in medical research to better understand the unique experiences lesbians have with the health care system.
“Our health needs aren’t actually that different from the rest of the population,” Applegate said. “It’s just that our health system has forgotten us.”
Epperson is happy that someone finally took a deeper look at lesbian health issues, as she said there’s a persistent lack of health equity for people like her.
“Women are already kind of put on the backboard for our health and then you have Black women and they’re put even further back on the backboard for health and then lesbians are pushed even further,” said Epperson, who is a person of color. “I think a lot of things we look at for the health for women, especially sexual health, are targeted at heterosexual women.”
There are a lot of misconceptions about lesbian sexual health, Epperson has found. She said she knows more about her own health than some of the doctors that she’s seen were wrong, and she’s had to find the correct information on her own over the years.
Epperson said a lot of challenges stem from most of health care, including women’s health, being built around heterosexual men.
“Women’s health just needs to evolve,” she said. “Women don’t know anything about their body because we’re taught to kind of be ashamed of these things.”
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Doctors have also shamed her about her sexual orientation, she said.
“When it comes to things like women’s health and sexual health, these are things providers should have a responsibility to be educated in,” Epperson said.
She hopes more providers — including nurses, medical assistants and front desk workers — will get educated through efforts like the study and using other resources from Equitas. In the meantime, she said people shouldn’t be afraid to speak up if they’re not being taken seriously.
The study also recommended that health care organizations provide more training and emphasis on being sensitive to how different groups interact differently with the health care system.
It is cultural awareness that Applegate seeks in the health care system — a gynecologist recognizing, for example, that they may need to take additional care when performing pap smears and other gynecological procedures on lesbians who may be uncomfortable with penetration. It also means providers not only understanding different sexual and gender identities, but actively affirming their patients’ identities and incorporating that understanding into their care.
“If that provider is not saying what you think you need to hear, then you need to seek a second opinion because there is someone out there who is willing to listen,” Epperson said.
Applegate was surprised and encouraged by the amount of people in the study who still sought health care, and that 92% of lesbians studied were out about their sexual orientation to their doctor.
She said it was a testament to the “resilience and resourcefulness” of the lesbian community that even after identifying previous instances of discrimination or unaffirming care, the majority of respondents had seen a doctor within the past year and felt comfortable disclosing their identity to them.
“There’s a lot of networking within the community that gets people into places that are safer,” Applegate said.
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Applegate also hopes the study provides the basis for more LGBTQ-related research that looks at individual identities and their unique needs and experiences, as opposed to lumping all sexual and gender minorities together.
“We are not a monolithic community,” Applegate said. “Research needs to think within the (LGBTQ) letters, not just across the letters.”